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Spouse or Partner Caregiver Forum
Very new at this
Hi Carly, welcome to the boards. As you have just found out, doctors sometimes don't explain things very well, and you are going to be doing a lot of learning on your own. Terminology can be confusing. Most doctors use a three stage model and they will say a patients' illness is mild, moderate, or severe. Most caregivers use a 7 stage model where stage 3 is considered mild decline, where friends and family are just starting to notice changes. People are usually diagnosed around stage 4, somewhere between mild and moderate. Unfortunately the pattern of decline is different for each person. Some people have a form of dementia where the most noticeable problem is speech. For all people memory problems, while often very evident, are not as concerning as lack of judgement, which can lead to financial problems and dangerous situations (driving, cooking, etc.), sometimes long before anyone sees any other problems.
You can expect to have to take on responsibilities in areas where you might not have had to before, from financial to household maintenance. Your husband is only 61? Has he been working? Has anyone talked to you about getting him on disability? You will need a durable power of attorney and a health care power of attorney. If you have assets it is a good idea to consult an elder law attorney.
You will need to learn to take care of yourself, I recommend a book called The Caregiver Helpbook, Powerful Tools for Caregivers.
Usual resources recommended here are a book titled the 36 Hour Day, an article available for free online titled Understanding the dementia experience, Teepa Snow videos on Youtube titled Making visits valuable, and Dementia Careblazers videos.
Keep reaching out, people will help.
Welcome to our club, that no one wants to be in. My wife was "MCI" at 58 and Alzheimer's at 60 that was 9 years ago. That is so called "young" or early onset Alzheimer's disease (EOAD)
Please fill in your profile with ages, employment status for both of you, children
State of residence, How long you have been married and then we can get started.
Very nice folks here who have all been through the mill.
There are a wide variety of legal, financial , medical and personal issues. We have all had all of them
We are here for you
If you scroll down thru several pages of threads on both the caregiver and the spouse forums, you will see other new people. Comments on those threads will be helpful to you. Lots of threads will be helpful to you just as a point of reference for the future.
Look at the following site for stage information; https://www.dementiacarecentral.com/aboutdementia/facts/stages/
People will caution you that most PWD ( person with dementia) exhibit behaviors from more than one stage though.
Welcome to our little world. Check back on your post for the next few days. Sometimes people post a day or two later as they have time.
Being a caregiver is one tough job. Here's a site that might help you identify the 7 clinical stages of Alzheimers Disease :
I am also new on this forum and at caregiving. My wife is 63 and has been diagnosed by a neurologist, after a CT and MRI, as having Mild Cognitive Impairment (MCI). At this point she has problems with language/speech and short term memory. A NP in the neurologists office said my wife is a 2 on the 7 level scale. That was five months ago and I think she is probably closer to 3 now.
Neurologists in this area appear to use the 7 stage measure. The seven stages are:
She was prescribed memantine but after 3 months stopped taking it. Just as well...if there was any positive effect from the med it was minimal at best. And the side effects of weight gain and constipation offset the benefits in my wife's view. Our doctor agreed.
So for now we are trying to get her insurance to approve further tests at Mayo Clinic's neurology practice. The necessary approval has not come through for her to go "out of network", but I'm cautiously optimistic. She definitely needs a complete evaluation. Perhaps then we can make more realistic plans for whatever the future has in store.
I've been on this forum less than a week and feel like I have received more information here than all of the doctor visits combined. It is a great resource.
My wife was also diagnosed at 61. That was 5 years ago. If you have not already done so, see a lawyer and get all of your legal work taken care of. Power of Attorney; Will, Medical Directive; HIPPA. Do that for both of you. We also set up a Trust.
There are good books on the subject. Most of us would recommend The 36 Hour Day.
Use these forums. There are a lot people with personal experiences who can help.
If your husband does the finances, begin watching him. You will need to take over some day.
Be prepared to lie. Sometimes the proper lie will be easier than the truth.
Be prepared to do the unthinkable, like taking away car keys and credit cards.
Get as much support as you can from family and friends. Don't try to do all of it on your own.
Be prepared for anything and everything.
I also recommend keeping a journal. It can help you keep track of the progression of the disease.
Durable Power of Attorney notarized today. Advanced health directive was already in place. And we have our larger assets, primarily real estate, in an LLC. My daughter is manager of the LLC and is the Attorney in Fact on the PoA.
I have taken her credit cards and changed passwords on banking websites. I caught her yesterday trying to change the password on her Health Care dot Gov account, I have no idea why, but I had already changed it. Her health insurance account has been changed as well.
While I think we are fairly well covered, surprises seem to be an integral part of this living hell.
Hello. This is my first post, but I have been reading. I am 71 and my husband 75. He was diagnosed with vascular dementia about 7 months ago, although symptoms started several months prior to that. He is having more testing next week. It is likely mixed-Alz vd. I am a retired nurse practitioner. I have even worked in neurology. I thought I could handle this. Well, I am feeling overwhelmed. When it is someone you love, it is different. He is aware of his loss, depressed sometimes, wants to be with me constantly. Talks constantly. Poor judgement. I won’t go on. You know the story. We are in the independence vs dependence dance. He wants to do things I self but when he can’t gets upset. Hard to hand over to me. I feel like I have no solitude. I get up early just to have some peaceful moments.
Everyone is different but I expect some of you recognize this. You have been very helpful to me. Ed, the article you posted on the way memory functions/disappears in this disease was terrific. Very helpful. The book that fits for me right now is Take Back Your Life:A Caregivers Guide to Finding Freedom in the Midst of Overwhelm. By Loren Gelberg-Goff. I have also been journaling. Helps me deal with my grief.
Thank you. Jenelle
My DH turned 82 in May. Looks like the picture of health...tall, slim, active. And has the same VD that his mother had, and his sister just died from at age 92.
DH doesn't have an 'official diagnosis' and refuses to talk about it with me. But both sons started telling me 5 years ago that 'Dad is losing it'. I didn't realize what was happening until we moved into Independent living two years ago.
DH is fiercely independent, still drives, just had a part in a 'radio play' in our community....and generally 'no one can tell' outside of family. In the beginning he had personality changes that increased his anger and negative behaviors, but he came 'out the other side' about two years ago, and he's much nicer, nicer than ever in our first 57 years of marriage (now married 59 years!). He also has some loss of empathy, has some apathy, and clearly has lost a great deal of executive function. But he still drives quite well, so he is my driver. I had to stop driving 6 years ago.
But DH has progressively decreasing short term memory...and also has forgotten all the trips we took in the past 10 years (Italy, Germany, Ireland...all gone). DH depends on me for keeping his calendar of medical appointments, play rehearsals, all calendar stuff.
We moved into an Independent Senior Living Community two years ago, not a minute too soon. I am severely disabled, which was the reason for our move, but this is also the right place for him. There are both Assisted Living and Memory Care facilities here.
My name is on all legal documents and bank and credit card accounts, and we no longer own any property. In fact, I've always managed our finances. Our financial advisor assured me that we cannot 'shelter assets' as they are all in 40lk accounts and the tax penalty for moving the money out of 40lk accounts would make the transfer to trusts and other accounts prohibitive.
We each have LTC accounts which we can access as soon as one or both of us have lost at least 2 activities of daily life. I would qualify now, but my husband is MY caretaker! Yes, such an irony. I'm physically disabled and he's rapidly becoming mentally disabled. And I won't be physically able to be his caretaker once his needs require any physical assistance at all because I cannot stand without my walker.
We'll probably move into Assisted Living together! There are even couples living together in our Memory Care facility, including a couple that moved into Independent living the same time we did, two years ago. So we are surrounded by professional staff who can assist us as needed.
Here is an example of how DH is losing it:
Last night he asked me to help him activate his LinkedIn account. LinkedIn is a professional website that people often use for job searches.
I asked him why, since he's 82 and long retired. He said "someone is trying to offer me a job".
He meant that he has had a 'scam e-mail or telephone call' telling him that there is a job offer for him, related to his LinkedIn account...he has NEVER used his account, and in fact almost never even checks his email.
It broke my heart to hear him say "someone is trying to offer me a job". I said, I think it's a scam.
He argued with me, and I made the mistake of persisting in trying to convince him that no one is offering him a job. I know that you don't contradict someone with Dementia, or ask for explanations, you just calmly accept whatever is said, and try for deflection (change the subject) and distraction (offer another activity) and eventually hope that the topic will be forgotten.
But it was said to me as we were going to sleep, and I reverted to old (normal) discussion mode.
This is a long journey, and we learn as we go, with some backsliding on my part, to say the least!
Again, WELCOME Janelle.
Thanks so much for the link. When I started to read it I noticed it was 27 pages long, and thought: Oh, this is too much.
Needless to say when I got to the end I wished there were MORE. I loved every word of it. Written with such sensible compassion.....and I know the article increased my own level of compassion and understanding for my husband, for everyone struggling with dementia themselves, and for their carers and family members.
This disease is horrible.
There’s no perfect way to deal with dementia. I think about that «joke.» If you’ve met one person with dementia, you’ve met one person. In other words, every individual is just that, one person whose disease will follow its own unique course despite the inevitable ending. Each case, each person, is different. Even in the same individual there are changes from one day to the next. As caregivers we can try our best. Sometimes what we do works. At other times, even something that worked today might not work tomorrow.
What’s most important is to be flexible and as knowledgeable as you can be about this horrible disease. Certain things are inevitable but symptoms may appear in a different order, especially at the beginning when we may not know what we’re seeing. Now that my husband is in the middle stage, I’m more aware of the subtle changes that may precede a more obvious, full-blown symptom of further decline. Sadly, Alzheimer’s worsens but we sometimes learn a few more ways to adapt. It’s never easy and your spouse won’t thank you, especially if he/she doesn’t understand or accept the condition (called anasognosia, which is not the same as denial). Coming to these forums has become a lifeline for many of us. I check-in every day now because I always learn something and I always find support.
Jenelle, welcome to the forum. Sorry you meet the criteria to join our family. But I'm glad you found the link helpful.
Elaine, you said you want more. Glad you thought it was good. Here is a link to the book at Amazon. It is 200 pages, and is priced right. I haven't read the book, but I'm sure there is a lot of good information there. https://www.amazon.com/Thoughtful-Dementia-Care-Understanding-Experience/dp/1480007579/ref=sr_1_1?dchild=1&keywords=Understanding+the+Dementia+Experience+by+Jennifer+Ghent-Fuller%2C+B.A.%2C+R.N.%2C+M.Sc.N&qid=1626994362&sr=8-1
Hello Newberian. You have been through so much. I can relate to much of your story. My husband & I moved to a small town to reduce cost of living before his diagnosis a few years ago. I know few people and never really felt at home here. I try to focus on the moment because thinking long-term or thinking about another move now is terrifying. He has very good healthcare, and he, too is in good health. Made an appointment with an attorney thanks to advice of people here. As with most of life, we are left to make decisions with too little information. I would be happy to chat with you in a chat room if you want.
How do you cope, Virgil? I try to focus on the moment, as there is still much to enjoy there, for us. When I can’t stay focused on the present, anxiety creeps in.
Even though my husband is earlier, it is the slipping away-fading-that I hate. Losing him. Feeling it is all on me to keep us safe.
I am so sorry about the early onset and decline for your wife.
Hello Jemije, I just saw your post. Wished I would have seen it earlier, Yes, would really enjoy talking in a chat room. I have to figure out how to get there. Do we pick a mutual date and time?
We have an apt. tomorrow with an elder care lawyer who has a good reputation. We did do a will, advanced directives and medical POW right after he was first diagnosed but even though the lawyer was considered an eldercare lawyer I felt that he offered no additional advice than any lawyer would who handles wills. Since then, I realized I was thinking that my health would remain to care for finances and legal issues. Then I realized, I needed someone to take on these duties in case I couldn't. This is the tough part. Having no family to rely on nor close friends, so depending on any other suggestion by the lawyer, I will let the courts pick a guardian.
The only asset we have is the home we live in. It is paid for but I don't know what I will do if I need to get outside help. We are living on SS benefits but I need to dip into small savings we have. So hopefully he can help with options.